A question surfaced last month is if – or why – patients should tweet, blog, or otherwise share details of their circumstances on the Internet. The discussion focused on the “case” of a friend, a thoughtful and bright woman who enthusiastically and frequently, perhaps assertively, shares her experiences as a person who lives and receives care for metastatic breast cancer. Apart from the brouhaha surrounding some vicious and factually incorrect columns by a married pair of journalists about her blog and Tweeting – the story might and I think should generate a broader discussion among journalists and doctors about patients’ privacy, social media and “openness” in the hospital setting.

This post may seem un-PC, especially at first. But my purpose is to consider the ramifications of patients using social media while getting treatment. I intend this as a conversation-starter:

From the physician’s side –

If I were a doctor making rounds now in a hospital, let’s say an oncology floor, and I knew that any of the patients might be tweeting – or could tweet – pretty much anything about his or her situation, I’d be uncomfortable about it, enough so that it might interfere with my giving the best care possible. Maybe I’d get over it, kind of the way reality TV show participants say they start to forget about being on camera all the time. But I’m not sure I’d be so honest with patients as I was, or open, as without a certain barrier, a “privacy setting,” between us (the patient and me) and the outside world.

In a (figuratively) glass hospital, I’d be more careful with my words and gestures. On the surface, that sounds like a good thing. Transparency breeds best behavior. But it’d be harder to give a patient a hug, to sneak-deliver a bunch of abandoned flowers in a vase from the utility room, to sit down in a chair at a patient’s bedside and watch the Olympics on TV for three minutes, say, while other patients (and colleagues) were waiting for me, to give a post-op patient with parched lips an ice chip, to break a minor rule. A barrier separating the patient and doctor from the world, the medical team, case managers…can strengthen the bond, and trust, between a doctor and a sick patient.

The loss of privacy can diminish the relationship. Many hospitals have rules on patients’ use of social media, and for doctors, too. But surely the future will bring new ways to break those rules. There will be greater connectedness, not less.

Now, a smart and careful patient might say to her doctors, as I do to mine: “Don’t worry, I won’t write about you on the Internet.” And I don’t, except occasionally and vaguely. Generous words, a genuinely positive “review” might cause trouble down the road. Because if something goes wrong later, and the doctor feels exposed… Stuff happens, and you may not be able to control it.

Why this matters is that if doctors don’t trust the patients they’re giving care to, the care won’t be as kind, or “good” in the sense of quality. To practice well, most doctors need to know, to be confident, that their patients will be careful and cautious about sharing information. In recent decades, doctors’ trust in their patients has eroded, not just from threats of malpractice, but by the plain fact that patients shift from doctor to doctor based on insurance and other changes, and, increasingly, receive care from medical teams and what some call patients’ “homes.”

From the patient’s side –

Being isolated in a hospital room leaves you vulnerable to doctors and other caregivers who may be inappropriate, rude and even abusive. This is especially true if you’re in pain, unable to walk or can’t speak. You might consider that having the capacity to call for help – to Tweet – is empowering. Health care #911, and very public!

But the main benefit, as I see it, is that patients with similar conditions can find one another and provide support, one to each other. When I was in the hospital for scoliosis surgery as a teenager, for instance, I think I would have benefited from connections to other kids going through the same. When I had my breast cancer treatment, maybe I would have found comfort in the support of – and being “with,” while in the hospital – knowing other women who were going through it, too.

Being sick and alone is scary. Having instant contact to the outside world can be a lifeline.

Lately I’ve been thinking a lot about the value of patients’ voices. As a doctor, I was trained to be somewhat skeptical of what people say, or admit, about their conditions. I was told, though never inclined, to steer the conversation, the history-taking part of the exam, to get the patient’s story in a way that fit succinctly, to answer the questions I was required to ask. The goal of the interview was to form a reasoned opinion about what might be ailing the person, i.e. a diagnosis – and, later, to establish a plan to help make the person feel better.

Journalists, whether they’ll say so or not, tend to do the same. They write an article with a purpose, on assignment or otherwise. And they’ll interview people with the goal of getting pithy quotes to make a point. And they’ll take the words other people and chop ‘em up, and present those to relate a certain narrative. Here too, I’m guilty.

But my point here, today, is about truth, and where the most credible information can be found. Can you trust a selfie?

When I glanced through yesterday’s paper on-line, I read a wrenching account of child abuse. The story, presented in the form of a letter, came through Nick Kristof, a reliable source in my view. I value his columns on environmental and women’s health. When I read the letter he presented, by Dylan Farrow, detailing the humiliating experiences she had as a young child in the home of her adopted mother, Mia Farrow, and the filmmaker Woody Allen, I was stopped by revulsion. Her depiction of an incident had the immediate effect of making me never wish to see another of Allen’s films again. Later on, I read Kristof’s regular NYT column, which includes just a clipped segment of the letter. The picture clouded. He makes a point with which I agree, fully – that girls and women who claim to have been assaulted, or abused, should be taken seriously. But I found myself wondering: how do we know what Dylan says is true?

I’m struck by how two versions of the same story, offered by one journalist, led me along diverging sympathies. One, in which the young woman’s testimony is included fully, left me feeling convinced that the filmmaker, who’s created many of my favorites, shouldn’t receive awards and, in fact, deserves punishment. The other, in which the journalist presents parts of her letter in the context of his admitting a relationship with the family and some legal issues around the case, left me wondering if the celebrity is a victim of finger-pointing or distorted recollections of things that happened to a child a long time ago.

The bottom line is that I certainly can’t know what happened, nor can most readers. Memory of pain, illness, trauma and ordinary experience is subjective.

Getting back to medicine –

Few journalists I know would want a doctor to not listen attentively to their account of their illness, however long. Many doctors claim they’re giving patient-centered care, but are they really listening to their patients’ stories? How do professionals count, or discount, an individual’s rendition of a story, and render a diagnosis or prescription?

My only conclusion is that it’s usually worth hearing what a person says, directly. She is a key witness to her experience. Doctors and journalists may aspire to being more objective, by documenting what happened to a person or group. They draw their own pictures, or graphs, and offer separate explanations of events and phenomena. But they make edits all the time, consciously and otherwise.

The idea is for women to take photos of their breasts, send them in, and raise awareness about the importance of healthy breasts.

You can look and “like” Boobstagram on Facebook. Over 20,000 have registered their appreciation for the site, so far. The timeline reveals that Boobstagram opened a FB account last November and first uploaded images late in February. The About page starts with this message: Send us your boobs at boobstagram@… When I visited yesterday, at around 7PM EST, over 9,000 people were “talking” about Boobstagram on FB. Boobstagram’s Twitter following is on the small side, relatively, perhaps because it’s an image-oriented source of awareness.

Instagr.am, for those readers who use Blackberries or might be otherwise out-of-the-loop, is a phone app that lets you take and share photos in a flash. Coincidentally, Facebook recently purchased Instagram for $300 in cash, plus.

On its main website, the company’s tag line is translated into English: “Showing your boobs on the web is good, showing them to your doctor is better.” The explanation continues:

…The fight against cancer is long-standing…We cannot all become doctors or surgeons. But we can all take part in prevention, for ourselves, for our friends and family and for others. But how?

…How to avoid the pitfall of moralism ? How to build a popular communication matching with the up-to-date scientific knowledge ? And how to create a rather fun prevention campaign when most campaigns use fear ?<sic>

Capiche? Not sure I do. (Please forgive me if I mix languages and messages, for the moment.) This topic’s ripe, pre-blended. And sort-of fun, as things go here.

Fact is – once I’d narrowed the post topic selections to either Boobstagram or a recent report on 10 distinct genetic breast cancer variants, I chose Boobstagram. The Nature paper is very important work. Fox News called it a landmark study, correctly from what I’ve read elsewhere. I should read up on the new genotypes, and learn how those relate to old-fashioned BC subtypes, and the prognosis and potential for targeted therapies directed to each. And so should, I suppose, breast cancer patients and their loved ones who wish to make informed decisions. Practicing oncologists should know all about that paper by now, digested it entirely.

Business Insider covered Boobstagram, but overall there’s not been a whole lot of attention in the U.S. HuffPo U.K. was on it, but not here, where I might post if I choose. I’m not sure if I will, or should –

This company, founded by two men, seems to be having some fun with cancer, women’s breasts and phones. Is it exploitative? I’m not sure whether to laugh, cry, or blow it off as boys behaving badly. Or girls behaving badly. Or both, together, normally.

It’s sexist, yes – but so’s an ordinary half-time show during a football game, or a pair of 4-inch heels. Besides, many tolerate infantilizing and commercializing events in the context of BC awareness, as Gayle Sulik points out. Those campaigns – some tawdry, some tasteful, and usually bright pink – rake in money for research and patient care. Is Boobstagram so different? Strictly off-limits?

Seriously, what if the website brought in 180 million Euros through ads next year, and the company founders gave it all to the IARC and a few really solid cancer research agencies? Maybe next year their American friends will open a similar platform to raise money for the strapped NCI.

Are we too uptight? Or is the problem simply that the French website lacks meaningful relevance to any cancer cause?

The almost-obvious, pat and probably correct answer, would be to call out Boobstagram for what it’s worth: a farce. There’s no hint that this company has a specific plan or funds to support cancer research or help patients in any meaningful way. I can’t support it. But maybe – and this is a stretch – in the long term cultivating love, or admiration… of women’s breasts raises their value, and reminds us of the tragedy that is breast cancer.

Nature just published a feature: Trial by Twitter. The piece considers the predicament of researchers who may find themselves ill-prepared to deal with a barrage of unsolicited and immediate on-line “reviews” of their published work. The author of the Nature News piece, science journalist A. Mandavilli, does a great job covering the pros and cons of Twitter “comments” on strengths and weaknesses of studies from the perspective of researchers whose work has been published by major journals.

She writes:

Papers are increasingly being taken apart in blogs, on Twitter and on other social media within hours rather than years, and in public, rather than at small conferences or in private conversation.

What I’d add is this:

Openness isn’t just about criticism. It can be a positive factor in bringing to light the work of small-lab researchers whose findings contradict dogma or conflict with heavily-financed work by leaders in a field. Through twitter and blogs, non-mainstream threads of data can gain attention, traction and, with time and merit, grant support.

Scientists who publish in major journals should be able to handle the flak. If their work is correct, it’ll stand through open peer review.

Is a question I ask myself almost every day. When I started this blog, it was partly a response to what I perceived an unbalanced attack on the value of breast cancer screening by the mainstream news outlets. Why it’s continued is, mainly, that I find it liberating and, in a strange way, fun. As I’m no longer practicing, this wide-open world of shared facts, some questionable, and new ideas keeps me alert and, maybe, in-touch.

But if that’s what doctors’ blogs are about, why don’t we just call it PR?

As I’ve said before, I do see value in academics blogging, especially if they’re not afraid to question, and don’t simply kiss up to authors who’ve published articles in major journals. I can see how Twitter from a trusted source like the CDC could be a rapid way to disseminate information about a new viral strain, an urgent need for blood donors, or a real public health emergency.

But for most practicing physicians, I just don’t see how they have time for it. Unless it’s like a hobby, or better – an open notebook – a way of recording your thoughts on what you’ve seen and learned in the day. That kind of blog can be great, even useful, for patients and other docs. The main thing is that the purpose of physicians’ and hospitals’ websites or blogs should be clear.

Recently I saw a tweet by @jamierauscher about whether she thinks to inform her docs about her use of social media. That’s a separate topic.

My fingers stopped this morning for a while when I came upon a reference to @whymommy. Last thing I read about her condition, she was at home having a tough but cozy Thanksgiving at home. Now she’s in the hospital and in her words, OK.

Susan is a woman in her 30s with metastatic breast cancer. People, including me, have described Susan as an astrophysicist, mom, wife… But the main thing is she’s a person.

As I’m staying home for the summer, I’ve asked bloggers to share images of where they’re from, or where they go, so we could take a virtual tour together:

Washington Monument, at the U.S. National Mall, Wikimedia Commons (WC) image

We’ll start with a post from the Washington, DC-based Prepared Patient Forum, where Jessie Gruman clarifies that Engagement Does Not Mean Compliance. As Jessie says, “I am compliant if I do what my doctor tells me to do. I am engaged, on the other hand, when I actively participate in the process of solving my health problems.”

Heading north, to Philly –

Philadelphia City Hall, from the steps of the Art Museum (image courtesy of Bill Strouse)

Here, steps away from the Liberty Bell and Independence Hall, Ryan DuBosar covers a hot topic for the ACP Internist blog. In But wait! I wasn’t ready for you yet, he comments on CNN’s recent report that some patients are starting to bill their physicians for wait time.

Nearby, Paul Levy likes to take hikes in places like central Massachusetts. Now that he’s Not Running a Hospital, he takes on Google+, the latest social media entry, and summarizes so many of potential connectors in Google+: Cutting down on the irrelevant cruft?. In this timely post, Paul asks the official ML question of the month: “Is it worth it?”

(No answers yet on the non-metaphysical question.) An added perk is a Tuesday term I was inspired to look up: cruft. Thanks, Paul; it’s always good to know more stuff…

In Dayton, with a skyline I’ve never seen, Hank Stern shares his thoughts on what he calls, um, the Best Little House Down Under, he suggests that Australia’s national health system leads some people to fund their health care needs through tricky career moves, at InsureBlog.

Venturing southward…

Louisville KY, along a bike route (courtesy of J. Mandrola)

John Mandrola writes from Louisville, where he practices cardiology, posts as Dr. John M, and cycles a lot. In Having a Hand to Hold, he considers the value of stable, long-term relationships in cardiac health.

Dr. R. Bates cools her feet in the reflecting pond, at the Clinton Presidential Library in Little Rock

In Little Rock, Arkansas, we’ll find plastic surgeon Ramona Bates. In her free time, Ramona quilts and posts at Suture for a Living. She’s been concerned about the heat wave, and recommends an “oldie but relevant” post on heat-related illnesses. Given how the weather’s been here and elsewhere, we should all probably take a break and read her wise words.

A postcard arrives from the Windy City, of Oklahoma!

After planning our route, John Schumann, an internist who’s been teaching in Chicago and posting at Glass Hospital, sent word that he’s moving, for real. He and his wife are taking on new positions in Tulsa, in August. Meanwhile you can read his Debunking Urban Medical Legend, on dealing with patients who want to sign out AMA. Or you can catch an embedded, education video featuring the doctor in a cameo role as a recalcitrant patient.

Hard to know, sometimes, exactly where the news is coming from. Which leads me to our next post:

Michael Kirsch, MD Whistleblower and Ohio gastroenterologist, recently visited Denver. He inadvertently submerged his iPhone into a pool where he took a dip, and then pondered An iPhone App for Medical Checklists? What’s truly remarkable is that Scientific American picked up on Michael’s situation so promptly; they got right on the case and immediately published a proposal to waterproof iPhones.

You’ve gotta have friends –

While in Colorado, we might visits some bloggers who live there:

view of Longs Peak, in the Front Range of the Colorado Rockies (image courtesy of Philip Hickey)

Upon hesitation, I share a post from Behaviorism and Mental Health – “an alternative perspective on mental disorders.” Philip Hickey, a retired psychologist, considers “the spurious medicalization of problems of living” in Natural Correction. I’m not sure where the he’s coming from, exactly, but the author does offer an idyllic view of the Rocky Mountains from his living room window.

In Stanford, CA, Paul Auerbach is as an accomplished ER physician and professor. According to Healthline, where Paul posts regularly, he’s authored definitive books on subjects like “Wilderness Medicine” (now in its 5th Edition) and “Medicine for the Outdoors.” Just this week, he wrote on How to Prevent Fatal Bear Attacks.

Wow. (For someone in my shoes, this is about as exotic as medicine gets.) Seriously, do they teach this at Stanford?) More posts from the Bay area:

San Quentin, with inmates looking toward the distance (courtesy of Dr. Tony Brayer)

Perhaps the most isolated, provocative source for a post comes from Toni Brayer of Everything Health, who writes on her experiences playing tennis with inmates at San Quentin. Better than my writing on it, go take a look at her fabulous perspective: “As I scan the horizon I see the hills of Marin County…then my eyes stop at a guard tower with guards holding guns.”

If you’re getting tired from so much virtual travel, don’t worry: there’s sex and a mystery sign ahead to grab your possibly-flagging attention:

Victoria, Capitol of British Columbia, image courtesy of Carolyn Thomas

Carolyn Thomas, of Heart Sisters, posts from British Columbia’s capital city of Victoria. She reviews some Surprising Trends in Women’s Heart Disease in an interview with cardiologist Dr. Tracy Stevens, and reminds us that “physicians are still practicing medicine based on cardiac studies performed mostly on white, middle-aged men.”

No kidding –

A few notes from our far-flung correspondents:

Sydney, Australia (WC image)

In Sydney, Australia, rheumatologist Irwin Lim at BJC Connected Care considers how a case of Ankylosing Spondylitis took on a life of its own. He describes how a determined group of rheumatologists, physiotherapists, a willing pharmaceutical company and patient advocates came together to raise awareness and help people with a rare autoimmune disease.

Trinity College, Dublin (WC image)

Paul O’Connor covered a June Conference at Trinity College, Dublin, on Links Between Arts and Health Care in his Ars Medica blog. After taking in a lot of broad range of presentations, he wonders “Can reading & appreciating the arts provide doctors with clinically relevant insights?”

Finally, Fizzy, an anonymous blogger at one of the first blogs I ever read, Mothers in Medicine, asks Is 12 Weeks Long Enough? She considers the pressure some pregnant women feel to work right up until delivery, so as not to lose a day of covered time off with a new baby. Seems like this could happen anywhere, and everywhere.

Spaceship Earth, at Epcot (WC image)

Well, I hope you enjoyed this medical-health tour, not of the “other” kind. It’s nice, sometimes, to just relax, put your feet up, and take in the views of others.

Many thanks to all the contributors, for sharing of themselves, beyond the posts,

I read in the paper this morning that some hackers successfully (?) broke into the PBS website on Saturday night and posted a story that is untrue. According to multiple sources, the fabricated article stated that Tupac Shakur, a rap performer who died in 1996, is alive and living in New Zealand.

Fox “News” (quotations added by ES) reports a group claiming responsibility was annoyed by a recent Frontline show on WikiLeaks. I googled Tupac and readily identified what is said to be his official website, 2pac.com. There’s a page dated sometime in February 2011, on the Legend:

…Born on June 16 1971 in New York City, Shakur’s parents were both members of the Black Panther Party whose militant style and provocative ideologies for civil rights would come to influence 2Pac’s music. At an early age, Tuapc’s love for performance and the arts began to show, as he began acting at age 13 and later enrolled in the Baltimore School of the Arts before dropping out at 17. Shakur broke into the music business with rap group Digital Underground as a back-up dancer and roadie. Eventually Shakur released his first solo album in ’91, 2pacalypse Now. 2Pac’s music career began to grow as his second album, Strictly 4 My N.I.G.G.A.Z included 2 top 20 pop chart tracks: I Get Around and Keep Ya Head Up.

Shakur’s legal battles began after he established his rap career. In the early nineties Shakur faced a wrongful death suit which settled out of court, accusations of assaulting police officers where charges were ultimately dropped, and even an incident where Shakur sustained 5 gunshot wounds from unknown assailants. In 1995 2Pac was sentenced one-and-a-half to four-and-a-half years in prison for sexual abuse. However, not even prison could slow the success of Shakur’s career.

While incarcerated 2Pac’s latest album, Me Against the World, was number one in the pop charts and would later go double platinum. Shakur became the first artist to reach number one in the pop charts while serving a prison sentence. Making the most of his time in jail, 2Pac became a passionate reader. Among his favourites were the works of Niccolò Machiavelli, an Italian Renaissance writer whose works were in part the foundation for western political science. Shakur’s appreciation of his work inspired the nickname: Makaveli.

After serving only eight months of his sentence, 2Pac was out on parole thanks to a 1.4 million dollar bond paid by Suge Knight, CEO of Death Row Records. Now signed with Death Row Records, Shakur went on to create All Eyez on Me, which featured hits How Do You Want It and California Love.

2Pac’s life was cut short in September of 1996 when Shakur became the victim of a drive-by shooting while his car waited on a red light. While Shakur survived the surgery that followed he was pronounced dead almost a week after the attack.

Even today, 2Pac’s influence is wide-spread…

album cover, "all eyes on me"

I have no idea how much of the legend is true, or if the 2pac website is really sponsored by the Tupac Amaru Shakur Foundation. Based on my limited education, I can confirm that Niccolò Machiavelli was an Italian philosopher of the Renaissance period whose writings influence some political scientists today. I might also confirm that guns really do kill people, here and elsewhere. This statement is based on my general knowledge and life experiences as a physician and citizen of the U.S.

In addition, I now know with certainty that at least one of my sons is familiar with Tupac’s music. He identified the artist in passing, while he walked by as it streamed from my laptop. He wondered why I was listening. In truth, I’m not sure about this. Curiosity, I suppose –

You can find some Tupac songs on YouTube. Based on a limited, first-time review this morning, I’d half-recommend Keep Ya Head Up. (You can send a ringtone to your cell phone, through this website with the lyrics.) In another video, he performs a song called Makaveli the Don. You can buy his CDs at Amazon.com, or elsewhere, or read one of several biographies.

My conclusion: It’s an information jungle out there.

The Medical Lesson: It’s hard to know your sources, especially when hackers can pretend to be a public broadcasting service. The only protection, as with health info that might come from a journal or doctor or a textbook in Texas, is having a good education and breadth of knowledge with which to assess the credibility of whatever you read or hear.

The approach seems like it might be confusing to people who are uneducated and perhaps can’t distinguish between the probability of a zombie invasion, UFOs and, say, re-emergence of the plague or the complete loss of electricity in North America. It seems careless, even unprofessional. I prefer the CDC be serious, 365/7/24.

The approach is patronizing, besides. I’m a woman who assumes responsibility for her health. Telling stories to gain people’s attention is how we treat children and early adolescents. It’s not for me.

As a blogger and journalist who looks at medical media, I can see that the topic garnered lots of hits. So for the WSJ healthblog, the NPR Shots and podcast and (admittedly) for yours truly here at Medical Lessons, the topic has value. (Except that no one would turn to ML for emergency preparedness, and I wouldn’t want them to do so – see disclaimer.)

Maybe the CDC likes getting hits, too. Perhaps the subject of imaginary medical stories is good for the job security of people who run websites at any salary-paying organization. But I don’t think coverage of a health story by a responsible news outlet should be determined by how many people will click on it.